Sasha Shulgin, Ann Shulgin, Paul Daley and others in Dirty Pictures, answering questions after the March 2010 World Premiere at South by Southwest (SXSW) in Austin, Texas:
Tag Archives: Ann
March 10, 2011 6:32:01 PM PST
Dear Friends, Strangers and Visitors from Other Solar Systems,
Now, as to Sasha’s state of brain and mind. As you know, he has mild dementia, which is the reason we have round-the-clock care. For a couple of years, he was taking Aricept and Namenda, which may or may not have helped slow the process, but which obviously weren’t doing much of anything recently. Our new doctor, Paul Abramson, decided to take him off those, and put him on hydergine, Albert Hofmann’s compound. That was about three weeks ago. I didn’t expect any obvious results, and of course one never knows if a state of dementia is being slowed down; I mean, how would you tell?
So when Dee (one of our miraculous Tibetan women) told me that Sasha was suddenly doing certain little things (like feeding himself) which he hadn’t been doing before, I said “What! He is?” or something like that, and she then listed a few other things that he was doing better, all of which was astonishing. Clearly, the hydergine has been changing things. He takes it three times a day.
I’m thinking seriously of asking our doctor if I might try the drug myself. After all, it’s my understanding that Albert and his wife took it themselves for many years, and my thinking, focusing and memory could use a bit of sharpening, to say the least!
I know that dementia is not reversible, and that the brain’s blood vessels can’t be cleaned out the way some blood vessels in the legs can be, but even small improvements — less sleepiness (sometimes), more ability to focus on things that matter to him (like chemistry), a bit less “sundowning” in the evenings (sometimes) — become immensely important to all of us. It’s like getting a bit more “real Sasha” back, even if it isn’t every day or every evening. We really celebrate every improvement of this kind, and hope that it’ll last for a while.
I hear from Greg that an amazing number of lovely people have asked what I want for my birthday. A card would be wonderful, but as for gifts — I’m sure you’ll understand when I say that what matters to me most is being relieved of the constant anxiety about how we’re going to afford to keep Sasha at home with the excellent and loving care he’s getting from our three Graces. By the way, Sasha’s increase in physical strength, his ability to walk now with a cane instead of a walker, is entirely due to the women who take care of him and put him through exercises all day long (although they do let him nap a bit in his chair after meals). They treat him like their own fathers, with love and humor, and you can’t put a price on that.
So what I want for my birthday is to find a few very wealthy and compassionate people who are interested in consciousness and familiar with the world of psychedelics, and who understand what Sasha’s work has meant — and will continue to mean, long after he dies — and can afford to help us keep him home and so very well cared-for.
In the meantime, I feel tremendous gratitude to all of you who have sacrificed God knows what, to send us whatever you could. It’s because of you that we’ve made it this far, and I hope you understand that I can’t thank you individually, although I would if I could.
The best thing I can do in return is to continue The Third Book. I’ve finally gotten to the point where I can put aside one whole day a week (with Tania’s help) to do nothing but write. Several chapters are already half written, and I’m going to re-write them and continue with new chapters and the necessary research next week. Tania is away this weekend, but after Sunday, she’ll be able to take the phones and keep the world at bay for that one whole day a week, and I’ll get started.
For now, I wish you all Blessings — and don’t forget to re-set your clocks before bed on Saturday.
Love and thanks — Ann
Okay, I’m B-A-A-A-CK. And never mind asking where I’ve been, because I wouldn’t tell you even if I knew.
Sasha is not only doing well, he’s doing remarkably well on the physical front, and even a little bit on the mental front. Our two Tibetan ladies, who usually take over during days, have been responsible for the improvements in Sasha’s body. They exercise him almost continuously, sometimes gentle upper-body stretching, which strengthens his arms, sometimes standing at the kitchen sink, lifting feet and legs (one at a time for now), and once a day, walking all the way to and from the lab. Gradually, they’ve weaned him off the walker and back to a walking stick (with one of the women next to him at all times), and as of today, he can walk all by himself with his stick — not fast, but steadily — although, again, with a capable, strong woman right behind him (they are really strong, these gals — all three of them).
No more shuffling steps, thank you very much, and no more moments of dizziness. With the increased strength in his legs — and arms — he’s beginning to hold himself differently now. A bit straighter, a bit more like the original Sasha we’ve been missing for so long.
Tomorrow, I’ll tell you about the mental side of things.
Love and Blessings — Ann
For the past week, I’ve been battling severe back pain, which will presumably disappear (at least for a while) on Friday, when I get my bilateral steroid back injection. The pain makes me feel like an old, stooped, withered great-great-grandmother — the kind whose voice is a quavering whine. Okay, maybe my body is slightly — uh — well, sort of old-ish, maybe, but my ravishing beauty is barely — er — well, never mind.
Along with the pain (actually, the “pain” is controlled pretty well by pills) goes a general feeling of weakness in the spine and legs, and that leads to a sense of exhaustion which is as much mental as physical, leading to depression (which I’m inclined to anyway), not intense, but enough to make it very hard to convince myself that there’s anything worth getting out of bed for. Some days are better than other days.
One of the things that I have let drop, temporarily, due to this generally icky state of mind, is Caring Bridge. After the injection Friday, I’ll feel a return of meaning and intent and interest (I hope and believe), and I’ll sit down and continue communicating. Until then, I ask you to understand and be patient — as I have so often — and I send you thanks and blessings.
See you this weekend. Don’t forget the Oscars (those who loathe them or couldn’t care less ignore this) on Sunday. My family members are for the Black Swan and the King’s Speech.
Goodnight. Sleep Well.
Love from me. Ann.
Dear Everyone (except males between ages 15 and 34 living in Nigeria),
Let’s see what reaction THAT brings about! The China remark and its responses brightened my day immensely, since it inspired a couple of tiny surges of adrenaline in me (in obvious response to the tidal waves of adrenaline in those who responded), and if there’s anything I need to help me get out of bed, it’s a pile of tiny surges of adrenaline.
We are getting better and better (“we” meaning Sasha), but there’s one problem that remains, of course: the one that makes it necessary to have 24-hour caregiving. Sasha’s brilliant mind (over 180 I.Q.) is, as you know, suffering from mild dementia. We’re finding out a lot about so-called dementia. For one thing, the state of mind — the acuity of mind — varies tremendously over every 24-hour period. There are days when he’s at the top of his form, as the British say, full of puns and funny comments, and when he’s in the lab (three times now), his chemistry is right there, with a few small holes here and there, but basically intact.
But at night (thus the term, “sundowning”), there is anything from mild misperception to frank hallucinations. And, unlike what one would expect, his profound experience with altered states doesn’t help him, because these states are full of anxiety and unease. Even when he’s having no pain from the peripheral neuropathy, he’s inclined to lie in bed and toss and turn, and when you ask him what’s wrong, he says, “I don’t know,” and if you ask if he has pain, he says, “I don’t know,” and then he argues for getting back into the Lazyboy chair (where he’s spent many hours in the evening), where he’ll go to sleep — usually. The only thing wrong about this sequence of events is that, unless he spends some hours with his feet up on the bed, his feet will begin to swell. The only thing wrong with swollen feet is that they are inclined to produce small cracks in the thin skin, and those cracks can form ulcers, and ulcers are what we’ve been fighting for the past year. With less than good blood flow, ulcers are real trouble, and they just won’t heal.
It’s possible that some of the sundowning at its worst may be due to one of his meds., Lyrica, which is one of the few good nerve pain medications available. One of its nastier side-effects can be, “mood-alteration,” which is pharma-speak for “messing with your head.” So we might be faced with a choice: attacks of nerve pain, or increase in sundowning. Even if we had no drugs that affected the mind, Sasha would still have a certain amount of sundowning, because it’s one of the things that goes with dementia. I’m grateful that it isn’t worse than it is, but one hates to see it there at all. I’m also aware of the fact that my reaction to it is part of the remaining shreds of denial — my semi-conscious refusal to accept the existence of any dementia at all.
My problem, not his.
We’ll see what the doctor says.
Bedtime. I should get on the stationary bicycle, because my legs are feeling very tired and achy, and I’ve got to get their strength back. But bed is so much more inviting.
Bicycle in the morning.
Goodnight and Good Sleep to all of you. And Blessings.
Ann and Him.